Starting medication v deferring and trying natural approach. Advice sought please


#1

Hi,

I propose not to take the one a day timed release Mirapexin that the neurologist prescribed for me as I would like to try and fight PD naturally as long as I can. Part of the reason for this is that I am concerned about the side effects, such as the sudden onset of sleep. This is because driving is integral to my job.

A Parkinson’s UK nurse has therefore suggested I go back to my neurologist and ask about MAO-B inhibitors as a as an alternative medication to start on. Has anyone experience of using this medication? Have you experienced side effects? Has it worked and improved symptoms?

Also has anyone experience of finding alternative natural products that are MAO-B inhibitors or Dopamine agonists?

Finally if anyone has tried the natural approach but then decided it wasn’t working and went on to medication.

I would appreciate hearing your experiences positive or negative regarding initial medication and/or trying natural alternatives.

Apologies if my questions come across as a bit random and disjointed. I am feeling really ‘dazed and confused’ at present, so any comments/help/advice would be gratefully appreciated.


#2

Hi,

This is a difficult one as you may have already learned Parkinsons is a boutique disease, not the same for everyone.

My personal view is if you wish to try the' natural ' alternatives just check with your pd nurse or gp first. Lots of advice on diet and exercise on the net. You Tube PD Warrior, john pepper and his views on walking very fast as the best type of excercise, also plasticity where the brain can relearn tasks, improve movements with repetitive training etc.
There are ideas on inflammation and eating foods that reduce inflammation, coconut oil , just google away.
I am relunctant to recommend other than ensuring you are as healthy as you can be , excercise and a healthy diet.

PDUK site has some diet advice.

I am one of the ok to feel slower and take as few meds as possible gang, as diagnosed at 46 and now 56 so am mindful of side effects over the long term.
I know of others who take much more drugs to feel 'normal' , be able to keep their jobs etc.
It really is your choice and dependant on your circumstances.

You are not alone, many of us have this dilemna and for me a mix of drugs, vit D3, vit K2, Q10, B12 , magnesium and zinc. Stretching excercises , walking and getting rest when needed. Raspberries for fibre and vit C , reduction in red meat and increase in nuts, veg , look at research on inflammation not conclusive but may help.
I did not take meds/drugs for a year , then only 1mg rasagline in third year started ropinerole up to 8mg then reduced to 4mg last year. This year no ropinerole trying Sinemet levopda 25/100 3 times a day . Works for me but thats just me Ms slow coach.

Best of luck , x


#3

I must admit I am a bit of a cynic when it comes to the natural route. Its the same advise for every condition, less red meat, less sugar, more fresh fruit, veg, nuts etc. And it goes without saying, exercise, exercise, exercise.

Well to a certain extent I have done all that but I still got PD!!!, so to have a panic attack now about it all now would just be counter productive. My advise is to do what you have always done within reason and take each day as it comes and focus on the things you can do rather than the stuff you can’t.


#4

Hi x
I too had the same feelings as you regarding taking medication I hv had Parkinsons for
over 10 years now and I too had been to the Dr's with a weakness in my hand and a tremor in my foot which when I went to see a Neurologist had diagnosed benign tremor and had described clonazepan which my Gp was wary of me starting with regards to driving.
My father had died of Multi system atrophy and although everyone was aware of the situation it wasn't until my arm started laying and feeling asleep and my good started to drag was I sent for a dat scan and diagnosed with Parkinsons or Parkinsons plus somewhat 4 years later in 2012.
Here I am now aged 46years old after having had horrendous side effects from pramipexole and little or no change to my problems until I was prescribed Stalevo I am waiting to go for a neuropsychology appointment with hopefully to having Dbs.
The Stalevo has been amazing really but I'm now on 3 hourly high doses of it 6 x a day and although trying to stay fit and well by walking etc I can now feel it getting me !
I can only suggest you try the Meds and hopefully you are in a catchment area with your GPS that are willing to try these drugs as before I was in an area which would only supply levpdopa and it didn't work.
I ended up looking on the forum and paying privately to see one of the consultants who actually writes for Parkinsons UK and he put me on all I can say some wonder medication which I unfortunately take 20 a day!
Im at the point where I can tell I won't be driving for much longer either with the drugs or I'm in the early stages of dementia my multitasking is not how it used to be and my neuro physiotherapist says they may not even even do the dbs. As you can see I'm now awake for hours in the night and dreadfully tired during the day .
All as I can say to you is your will know with your body and your driving that you need the medication, try and stay as physically fit as possible as walking my dogs in the woods kept me going through the depression and other problems I hv encountered.
Go with the Parkinsons, chin up take the Meds when you yourself know it's too much, stay fit as long as possible, think know of your job and get advice from a good Parkinsons specialist who in his words 'can make you look better ' and did !
Good Luck xx


#5

We are all diiferent..Me: 73, hand tremor started 12 months ago. Idiopathic PD.
My plan is to avoid anything that raises dopamine for as long as possible. I take Vit D3 6000 IU pd, plus: omega3 fish oil, magnesium, inosine, beta-carotene, trans-resveratrol, B-complex, NAD, K2, selenium, zinc, vitE, n-acetyl cysteine, VitC, lipoic acid, acetyl-L carnitine.
I avoid haem-rich foods ( beef, liver, back pudding) to avoid iron (and copper from liver).
Its an experiment aimed at raising brain anti-oxidant capacity and mitochondria function to better control calcium signalling and toxicity.
Melatonin to help sleep. Excercise,,,but I find compliance difficult.
Tremor might be a bit less or I could be imagining it is. But not worse. However that is not unknown to happen in others without the cocktail I take......we are all different. However I reckon controlling oxid stress is very important.. hence the experiment.
Peter


#6

Hi,

Thank you to all of you who have taken time to reply and share words of wisdom and advice.

From your replies I have taken reassurance that I am not alone and that others also have similar questions and quandaries.

At the moment it is all still so confusing, but thank you for sharing your experiences and views. It has made for interesting and thought provoking reading.

I see my PD nurse in the next month and will be asking lots more questions in the hope of receiving some answers and hopefully moving forward.

Sending you all my Thanks and Best Wishes.


#7

I am 10 yrs into pd journey but only take 3 x 25/100 or 2 on odd days.
I exercise but need to increase this.

I too am wary of “over exciting” cells leading them to die. I am taking supplements and eating more anti inflammatory foods. I believe there is a link to diet in addition to exercise to at least slow the progression.

I have idiopathic pd.

Good luck,


#8

I would encourage you have vit D levels checked, this is evidenced to help. Some people with pd have low levels and vit D is important for brain function.
If you have it checked at least you will know if you require supplements. pduk alongside dementia sites recommend this.


#9

And get started on coconut oil. Contain medium chain triglycerides which help with the pathways in the brain